Rent and the commodification of disability support services

Let me be frank. There are many stringencies that have to be faced in the provision of disability support services. We all know this whether we are residents, workers or management of support facilities, or officials of the Department of Health and Human Services (DHSS). We all are under the pump in an economic climate where there is widespread political anxiety about budget blow-outs and a possible collapse of our entire financial and economic system. We all know this. So when I make my professional contribution, as a resident of such a health-care facility, my recommendations and plea are complex.

I would ask that readers appreciate that I too am a citizen, a members of this polity, one who has paid my taxes, one who has worked persistently to promote the common good. Yes, what I am about to say is framed in my own interest but it is not only that. I am just as much concerned morally as any other non-disabled professional person about the serious state of our disability support services. Unless that is understood then my point will not be appreciated.

There have been developments at the level of Federal and State Government funding – negotiated through the Council of Australian Governments – that have brought about significant changes to the delivery of human services more generally and disability support services in particular. I do not have access to a research facility to adequately assess all these – I regularly seek advise from those who may know but I do not want readers to presume that I have mastered all the details of all the complex agreements, contracts and policies that are now in place.

But nevertheless there are very important issues that, I believe, have not been and are not being, addressed and adequately communicated to residents like myself who are implicated by these decisions. So I am taking the risky route of admitting that I don't know all that I should know even if I am impelled by my professional responsibility to continue to speak up. Those who know me, and who find it almost impossible to follow my slurred speech when my speech-therapy trained personal carer is not in attendance will readily see the irony in my determination to "speak up"!

So what is my point? Is it about the line-item of rent, an increase that I believe may be beyond the affordability of most clients? Well yes it is, but it is not merely a complaint about that. And it is not just about me. Sure, I am wanting to include myself as one who will have to bear the brunt of such an increase, but I am wanting attention to be given to the context in which this increase is now being implemented.

We get an individual rate including rental allowance of $988.60 per fortnight. But our rent of $588.10 per fortnight, residential fees are currently 59%, of the full rate of the individual DSP. This leaves us clients with a minimal amount of 'disposable income' to then meet 'medical costs , including the cost of materials to adequately satisfy hygiene requirements, and other everyday expenses.

Now, as I have said, I am responsible to maintain my own professional responsibility and so, I pay $180 per month for an internet and utilities bill. (As an aside here, it would seem to me that the internet and telecommunications provider as providers of such public utilities should also be helping me keep costs down). But that does not leave much for other costs as well. I am severely constrained in what I can do and I have opportunity for only minimal social interaction! But with an increase in rent such minimal interaction looks to me like it is going to have to be miniscule!

I'm not wanting to go out and play the pokies. I am not wanting to go out every day or every night. But when Rent is increased for my residence the "open lifestyle choices" that were said to be on my horizon when I came to the facility are vanishing before my eyes. And in this I wish to flag the fact that I am experiencing a significant measure of socio-economic impoverishment that can be alleviated without much cost. At least that is what it seems to me.

John Walsh (PWC) in Disability Expectations - Investing in a Better Life, A Stronger Australia (2011) noted that poverty and disability are very closely linked. 45% of people with disability live in poverty. I suspect that when social interaction which is, in fact, unpriceable is diminished for disabled people like myself, poverty is deepened considerably, not only in psychological terms, but also in social and cultural dimensions. Think of the needs of families. Think of the contributions of friendships. This is not sentimentalism; it is reckoning with the importance of nurturing ourselves as social-emotional actors.

Let me give an example. My birthday was in June and there were no staff to assist me to go out on that day. Even though movie watching is a dwindling pleasure, due to increasing blindness, going to the movies allows me the comfort of just joining others in this public entertainment. So I missed out. And that was when we only had eight clients in the house and now we have nine clients in the house. But it was not just me who missed out. The carer who could have come with me also missed out!

When I studied sociology some years ago we confronted the fact that impoverishment begins from a lack of accessible community engagement.

Okay, granted we are dealing with a Not for Profit service provider that pays all funds it receives back into the organisation! But then with all these rising costs, why should the brunt be worn by reduced social interaction by those who most need it? Am I simply adopting an envious or greedy ideology to suggest that the management side of the operation should also have its salary and entitlement line-item on the budget reduced? We know that managing finance requires forward planning. And so the question arises: when the service provider accepted the contract to house us clients were not these latter-day stringencies on the budgeting horizon? And such a critical question cannot simply stop there.

Let me be very provocative here: the major political parties tell us that their new Federal-State relations have brought about new and allegedly efficient economies to social welfare and health. OK. It is from our taxes that our political parties have been paid for running election campaigns. Large amounts go to the political parties to prevent them from going bankrupt. So where is the public education material that has explained clearly and simply why these new latter-day stringencies have come about for disability support services? Why is there such widespread anxiety among those concerned about the rejigging of costs from the Federal to the State level? If there is no extra impost upon those who can least afford it, and financial obligations have merely been balanced in a new way, why has it not been explained clearly and unequivocally?

One probable answer is that the political parties have not actually been willing to engage in such positive political education. They've been too busy simply trying to tweak support by a politics of negation. Maybe then, public funding for elections should be cancelled until these privileged parties can actually show that they are able to engage in political education in a just and fair.

Let me go further here: my progressive illness creates a deterioration of motor skills, leaving all my physical attributes severely disabled. However, I am still able to perform research and write pieces like this presentation to this forum. Basically my performance is made possible through the synergy gained mainly through my work with my support worker and a long-term academic associate.

Let me explain why I am taking the opportunity of emphasizing this concept of synergy in this article. Even if I wanted to, I cannot wave my arms around and bang my fist on the table about public policy. They say the pen is mightier than the sword, and for me there is a synergy with various people who help me get my views across which is crucial for me and I dare to say for people with such different abilities and their support workers. It is about life chances and the creation of opportunities. Therefore, the essence of synergy is to value difference in order to stimulate living options.

Now I perceive that the service provider, has a real problem - there is a trend in the disability carer workforce is towards casualisation. My complaint is simple; it is also a fear. This tendency in the workforce undermines the ethos of the place where I live. I find myself alarmed by the reduction in the friendships I have formed with my support workers. Casualisation frightens me because it requires constraints upon the synergies I need to keep going, at a time in my life when my energy is reduced. Perhaps further discussion can pinpoint ways in which casualisation changes the ethos of our living place, our homes.

But can I plead with the service providers management to resist the casualisation of our work-force? Basic friendships between us and support workers take time to develop. I need to teach my carers how to care properly for me as my body slows down. I just do not have energy to mount yet another re-education of a new support worker. Please. I am asking for sustained corporate consideration of the importance of ensuring work conditions that carers can happily stay on caring for us residents. Continuity is so crucial to the ethos of the place.

But I perceive a problem here and it becomes a political problem. The casualization of the work-force now coincides with the compulsory competitive tendering that DHHS requires before a contract to run a facility is granted. And the fear I have is that the increase in rent that I am required to pay coincides with a world-view in which the residents of disability support service facilities like my own are treated too much like commodities for trade when the auctioning season for contract renewal arrives. I know this sounds extreme; but this tendency is confirmed when the need to nurture genuine lasting friendships between residents and carers is misunderstood. The unpriceable nature of friendship is not that it is worth out worth; but its worth actually transcends the fair dollar value of the service.

And that misunderstanding at the level of management hollows out the ethos of service delivery because it lacks attributes necessary for sustained caring of us residents. But there is an "altruistic" outcome in the social service delivery of which I am the beneficiary. It happens at the workplace which is "my place", the location of such synergy. It generates friendship - workers and clients become "mates". This workplace is where we actively welcome the visitors into our home. "My place" is sustained by friendships that generated there.

In other words I am suggesting that the relationship between a support worker and a client is what this is all about. This is also an industrial issue. We cannot deny the relationship factor involved in caring for people with disabilities. The management of facilities providing services must come to acknowledge this if people with disabilities are to gain their full potential and respect in society; just policies are needed to ensure that carers will stay around as an important part of our life! And it seems, sadly, that such an insight is foreign to the political horizon of our major parties and the governments they form.

Am I suggesting that the organisation running the facility where I live should become more political? Yes I am. But I am suggesting that they need to do that by emphasizing policies that will embody justice and fairness. That is the way service providers can make a positive contribution not just to the life of its residents and its workers but to our wider society and our responsibility for each other. Thank you.